Arts world takes on Parkinson’s

Stephen Hunt, Calgary Herald10.02.2013

Doug McKeag and Doug Curtis outside the Arrata Opera Centre. McKeag plays a character inspired by Curtis’s struggle with Parkinson’s Disease in The Alan Parkinson’s Project, which has been invited to present at the World Parkinson’s Congress in Montreal the first week of October, 2013.Stuart Gradon Stuart Gradon
/ Calgary Herald

University of Calgary professor Dr. Bin Hu is presenting a lecture on his work with Parkinsons patients.Photo courtesy Dr Bin Hu

If there was ever any question whether Parkinson’s disease is having its 15 minutes of fame, the Rolling Stone cover story answered it.

There, on this month’s issue, in a leather jacket, is Michael J. Fox, the celebrity personification of Parkinson’s disease, a neurological disorder that leaves your inner life intact but robs your body of the ability to communicate with the outside world.

Fox is back on weekly TV with a new sitcom featuring a dad with Parkinson’s, bringing the disease into the media mainstream in a way it has never been before.

For Doug Curtis and Heather Moore, a pair of Calgary theatre artists, as well as Dr. Bin Hu, a University of Calgary professor at the Hotchkiss Brain Institute, the timing couldn’t be better.

This week in Montreal, 3,000 clinicians, researchers, caregivers, academics, patients and family members from 44 countries and six continents around the world — everywhere from Uruguay to Albania to Malaysia to the U.S. — will gather to discuss recent developments in research, to gossip, inspire and compare notes at the World Parkinson Congress.

They’ll also check out some shows, including the Betty Award-winning Alan Parkinson’s Project, the 2006 musical created by Curtis, another funny, talented artist with Parkinson’s — but not a series on NBC — that explores the impact being diagnosed with the disease has on a filmmaker.

The congress will also feature a group of dancers from New York with Parkinson’s, who heal with dance instead of medicine, and a lecture from Dr. Bin Hu, detailing his work treating Parkinson’s patients with music.

For Heather Moore — Curtis’ wife, caregiver, and creative collaborator on The Alan Parkinson’s Project — the congress is as much about art as it is science.

“One of the most important things about the congress,” she says, “is the creativity that happens with Parkinson’s.”

Curtis (and Moore) spent the week holed up at the Arrata Opera Centre in downtown Calgary, where a cast of Calgary artists including Doug McKeag, Joe Slabe, Kris Demeanor, Jed Tomlinson, Adrienne Smook, and Chantal Perron were busy getting the show back up on its feet again, after a several-year hiatus — it last played Calgary at the Vertigo Studio Theatre in 2008.

For Curtis, the founder of Calgary’s Ghost River Theatre Company, where he created the show, the experience of watching the story of a filmmaker coming to grips with Parkinsons is a bit like looking into a mirror of his life.

“I’ve been like Phantom (of the Opera),” he says. “Lurking in the background.”

For Moore, the rising profile of Parkinson’s reflects the shift in the perception of who the disease affects.

“Up to now, we’ve thought, that’s what old age looks like,” she says, “But now, the demographics of the disease are changing. You’re 39 and people are getting it.

“(And also), Michael J Fox has done an extraordinary job getting attention focused on (the prevalence of early onset) Parkinson’s.”

In addition to the Alan Parkinson’s Project, there will be an additional Calgary contingent, led by Bin Hu, who treats Parkinson’s patients with iPods.

“The concept is rather straightforward,” Hu says. “Use the music (they listen to on their iPod) as reward or arousal — emotional stimulation — to regulate parts of the brain that we think can compensate the lost functioning in Parkinson’s disease.”

The project works by having the patient strap an iPod to their thigh, where it will only play if the patient takes a long enough stride.

The objective is to prevent Parkinson’s patients from the shuffling that is one of the trademark symptoms of the disease.

“The shuffling itself is not that debilitating,” Hu says. “(But) it’s the first step that leads to freezing.

“The next step (after shuffling),” he adds, “is ... you lose your ability to walk ...(and) that will lead to what we call physical deconditioning — so that’s why there are high incidences of Parkinson’s disease patients who are hospitalized, or getting ill and (who) die earlier.”

Hu’s project is a kind of distant cousin to an arts-based form of rehabilitative dance created by the Mark Morris Dance Company more than a decade ago in Brooklyn.

When a local president of the Brooklyn Parkinson’s Club, Oli Westheimer, heard that a new dance company was opening a studio in the neighbourhood, she went and suggested they offer a class to her club.

When the company member assigned to lead the first class couldn’t teach it because of a family emergency, Morris company dancer David Leavanthal stepped in and taught the half-dozen members of the Brooklyn Parkinson’s club who showed up for that first class in 2001.

When the project launched in 2001, it attracted a half dozen Parkinson’s dancers, who found that dance developed flexibility, instilled confidence, stimulated them, gave them a social outlet, helped with balance and brought joy into their lives.

Today, the Brooklyn class attracts anywhere between 35 and 50 participants. The company now holds classes in four different New York City boroughs, and, thanks to years of touring, where they would offer classes and instructor training, there are Dance for Parkinsons’ Disease classes offered in 31 states, in Canada and in eight other countries around the world.

Leavanthal and the Brooklyn Dancers for Parkinsons’ will also be in Montreal for the World Congress.

Montreal will be a far a cry from the dance company’s first visit to the Parkinson’s World Congress in Switzerland in 2006, when researchers regarded them with what Leavanthal describes as “bemused skepticism.”

That didn’t last long.

“After participating in a class,” Leavanthal says, “they really understood what we were doing.

“It became not so much as a challenge for us to prove that dance works (as a therapeutic treatment for Parkinson’s), but rather (it was) a challenge for them to find a way to measure the positive impacts of dance on people with Parkinson’s.”

(In Calgary, Decidedly Jazz Danceworks also work with Parkinson’s patients).

“We’re taking projections another step with this production to use as our set,” Moore says. “We go deep into the brain.”

By blending art with science with vigourous physical activity, Parkinson’s researchers may just be unravelling the future of health care

“The truth about something like Parkinson’s disease,” says Leavanthal, “is that treating it really requires a team approach. Interventions are limited. Dosages of medicine need to be changed.

“People have surgeries and then get sent home, and then — oh, yeah — there’s the rest of your life. How are you re-engaging with the quality of your life? That’s where I think we come in to it with dance.”

You don’t have to convince Hu that Parkinson’s is having its 15 minutes, either.

“It has a huge impact,” Hu says. “Many, many people are basically saying, if Michael J. Fox comes out — I’m talking about patients now — we should come out.

“There are many people like that, young onset Parkinson’s patients who are still in the workforce and so (now), they’re not ashamed to say, I have Parkinson’s and I want to do something about it.”

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